Back in 2008, Lise Hafner and her two brothers sensed something was
not quite right with their mom. Then the doctor made the dreaded
diagnosis: Priscilla Hafner, their energetic and independent 78-year-old
mother who lived alone in Toronto, was in the early stages of
Alzheimer’s disease.

Lise and her brothers realized their mother was facing a hard road.
How could they ensure their mother was safe? How could they honour their
mother’s wish to remain in her home “until she was carried out feet
first?” And how much would it all cost?

Chances are you or a loved one will one day be in a situation much
like the Hafners, where you’re making arrangements for an aging parent
who needs help with daily activities. And like Priscilla, most people
probably prefer to get that care in their own home, at least while it
remains a viable choice. Unfortunately, just understanding the patchwork
system of private and public senior care is no small feat. [More: Income that lasts a lifetime]

To help, we’ll describe what you can expect from in-home care. Then
we’ll advise what help governments typically provide, and what you’ll
need to pay for yourself. We’ll help you understand when in-home care
makes the most sense, and describe when a retirement residence or a
nursing home are better alternatives. You may be surprised to learn
these options are more attractive than you think.

Get by with a little help. When a parent or other
relative starts to get frail, daily tasks often start to slip. Perhaps
housework and yard work start to build up, and it is hard to keep fresh
food in the fridge. The parent may no longer drive, and may have trouble
managing basic activities like bathing, changing, preparing meals, or
keeping track of their medications. The children often get more involved
at this stage, but they are probably busy with their own families and
jobs, and may not even live close by. It’s easy to feel overwhelmed.

“Get help before you’re totally exhausted,” suggests Peter Silin, a
care manager and principal with Diamond Geriatrics, Inc. of Vancouver.
(Care managers are typically hired by families to oversee care for a
loved one.) There’s a whole industry of in-home caregivers devoted to
helping frail seniors with daily activities. While you may feel guilty
about off-loading these tasks, you’ll find that it frees you up to spend
more meaningful time with your parent.

When you think of in-home care, you might picture it being done by a
nurse. But most paid care in the home is provided by legions of
hardworking paraprofessionals with job titles like “personal support
worker” or “personal care worker.” They don’t have medical training, but
they know all about helping with mundane activities like bathing,
changing clothes, toileting, grooming, getting groceries, preparing
meals, helping frail seniors eat, doing housework, driving to
appointments, and helping your loved one get around the house. You can
hire these personal care workers yourself, go through an agency, or
sometimes get these services assigned and supported by governments.
Providers range from non-profits like the Victorian Order of Nurses, to
small local businesses, to large national companies. [More: Budget reveals plan to raise retirement age to 67]

If your loved one is mobile and needs just a bit of help, a personal
care worker might come twice a week for two hours each to help with
bathing and grooming. If your parent needs more help, the worker might
come once a day to help with changing, toileting and preparing a hot
meal as well.

Other home care needs may arise on a shorter-term basis, such as
after an operation. (And here nurses are more likely to directly provide
care.) Or if an elderly person is near the end of life, the hospital
may send him or her home to be with family but have a nurse stop by
periodically to provide pain medication. That’s what’s known as
“palliative” care.

When Diane Speirs’s aunt came home from the hospital in Vancouver
after falling and breaking her arm, a personal care worker visited for
up to 1½ hours every day to help her change clothes and sanitary
garments, clean the bathroom and kitchen, help her bathe and do laundry.
But Diane and her husband Brian also visited four or five times a week
to bring groceries, help with housework and yard work, pay bills and
take her to doctor’s appointments. “We did whatever else needed to be
done,” says Diane.

Who picks up the bill? At this point you’re probably
wondering who pays for all this care. The good news is provincial
governments will help out—but only so much. Short-term post-operative or
palliative care are frequently covered, but beyond that, governments
keep a tight hand on their wallets. [More: Ask MoneySense: Early CPP]

Typically provincial governments provide in-home care through a
regional health agency. (They’re called local “health authorities” in
B.C. and “community care access centres” in Ontario.) If you’re looking
for government help, you can get a referral from the family doctor or
contact your local health agency directly. On request, they’ll generally
send a case manager to assess your loved one’s needs. They allocate
their support based on need, and in some provinces, also on your ability
to afford care yourself. The maximum you can generally expect
government to pay for is two hours a day, says John Schram, president of
the Canadian Home Care Association. Unfortunately, “that quite often
isn’t enough. There’s a huge gap between what people need and what they
typically get,” says Schram, who is also CEO of We Care Home Health
Services LP.

Nothing is automatic, even for basic forms of government-paid help:
you need to make your case persuasively. For example, in Ontario, “the
government realizes that if the risk of falls can be minimized, there’s a
better chance of keeping that senior safe and in the home,” says Audrey
Miller, care manager and managing director of Elder Caring Inc. in
Toronto. “What I’ve learned in my time is the way to get some help with
bathing is to say something like ‘My mother had a fall. I’m concerned
she’s at risk while bathing because she lives alone.’”

For what government or family members aren’t able to provide, you’ll
need to pay for yourself—and the costs quickly escalate. Personal care
workers hired through an agency typically cost $20 to $28 per hour,
often with a minimum of two hours or more per visit. A full-time,
live-in personal care worker can cost $1,800 to $3,000 a month, plus
room and board. (Add another $1,500 to $2,000 a month if room and board
is not provided.) If you need round-the-clock care, that may require two
or three full-time caregivers. (Even live-in caregivers can only be
asked to work one shift a day, and they require time off.) While most
middle-class seniors can afford to pay for a little bit of help, you can
quickly get to the point where only the very rich can afford it. “If
money is not an issue, you can always make in-home care work, but it
might mean making your home into a hospital,” says Miller. [More: Lost after a loss]

Better than you think. Eventually you’re likely to
go beyond the point when in-home care makes sense. Just where that point
lies is different for everyone. It depends on your loved ones specific
needs, personal preferences, finances, and the practical difficulties of
providing extensive care in a family home. Fortunately, the other
options are probably better than you think—and they are often within
financial reach for middle-class Canadians.

A retirement home may be a good choice for seniors who want their own
apartments but also want common meals, housekeeping and social
activities in a home-like setting. They often have “independent living”
sections for mobile residents who require little or no personal care, as
well as “assisted living” for those who need moderate help with
bathing, changing, or taking medicine. While retirement homes are not
cheap, middle-class Canadians can usually afford them with the proceeds
from selling their home.

If your loved one needs a lot of care—say he or she has advanced
dementia or requires help with the most basic activities like
transferring from a bed to a chair or toilet—it may be time for a
publicly supported and regulated nursing home. We know what you’re
thinking. The idea evokes images of dreary Victorian-era wards, but
nursing homes these days are much homier and less institutional than you
may think. (Confusingly, nursing homes go by many other names these
days, such as “long-term care” in Ontario and “residential care” in B.C.
)

Even if you can afford the most elaborate and expensive in-home care
possible, your parent may prefer the social interaction of a retirement
residence or nursing home to isolation. “You can buy all the services
you need at home, but you can’t buy a community, a peer group, which you
can get in assisted living, independent living or a nursing home,” says
care manager Silin, who is also author of Nursing Homes and Assisted Living.

The Hafners’ journey. The right care option for your
parent or loved one is ultimately a personal decision. Consider the
journey the Hafners went through after Priscilla was diagnosed with
Alzheimer’s. Lise and her brothers, Eric and Gordon, realized they
needed help to keep her as safe and happy as possible. [More: The three magic numbers in retirement]

The three siblings lived many miles away with families of their own
in separate U.S. cities. As a result, they were limited in how much time
they could spend directly caring for their mom in Toronto. Priscilla
was an energetic, no-nonsense woman who had lived on her own since her
husband died in 1994. But the combination of an independent spirit and
the symptoms of the disease made their mother difficult to help. She
turned down pleas from her children to move closer to one of them.
That’s not surprising: seniors with Alzheimer’s tend to cherish familiar
surroundings and get along best with people they know.

Lise and her brothers started off hiring a driver to take their
mother to her daily appointments and other outings. That was enough for a
while, but as the disease progressed they found Priscilla needed more.
The next step was finding a live-in caregiver and making a few changes
to the townhouse, like removing the knobs from the gas stove. Eventually
they needed three live-in caregivers providing round-the-clock support.
The siblings realized they were unable to coordinate all of this from
afar. “Don’t underestimate the logistics,” Lise advises. “It’s
expensive. It’s exhausting. It’s emotionally draining.”

The Hafners hired Audrey Miller of Elder Caring Inc. as care manager
to handle the staff, monitor their mom’s condition, and take her to
doctor’s appointments.

Gradually the elaborate system of in-home care became unworkable. As
Priscilla’s Alzheimer’s got worse and other medical issues developed,
they realized her home was no longer safe. And although they felt
conflicted, they realized the need for safety trumped their desire to
fulfill their mother’s wishes to stay in her home. “The time came when
we just could not keep her in her home any longer,” Lise says.

So recently the three kids moved Priscilla to a facility that
provides long-term specialized care for seniors with dementia. Now
they’re working to make life as rich as possible in this new setting.
“Is it ideal?” Lise asks. “No. But I think we all have a sense of
relief, because we know we’re over the first major hurdle, because she
is safe.”